Diagnosis type, treatment cessation, nutrition, religion and spirituality, sedation or pain relief administration, the choice to prolong or end life, symptom management and drugs, physician, family or friend support and the development of advance directives factor into successful hospice planning and service, experts say.

Hospice care patients count on family, friends, physicians, nurses and medical staff to navigate the health care and social work systems to enter the severe or terminal stage of their illnesses, the federal agencies National Institute of Nursing Research (NINR) and the Centers for Medicare and Medicaid (CMS), Institute of Medicine (IOM), hospices, nonprofits and relevant professional trade associations report.

Of the deadly illnesses treated in hospice care, cancer is the second leading cause of death nationally, being responsible for 25 percent of all such deaths, a 2013 study in the Journal of Hospice and Palliative Nursing found.

In fact, cancer is found to be the most common diagnosis, making up about 40 percent of the hospice patient population. The remaining 60 percent of hospice patients had diagnoses for heart disease, dementia and kidney, liver and lung diseases, the study revealed.

The aforementioned illnesses represent some of the top 20 hospice terminal diagnoses by the number of patients in hospice care researched and reported by the Centers for Medicare and Medicaid.

For example, the Centers for Medicare and Medicaid hospice data trends for 1998 to 2008 from the federal agency’s Health Care Information System (HCIS) show the top 20 diagnoses annually, based on the number of Medicare hospice patients with those illnesses; the percentage of Medicare patients for the year which the disease represents, and; the average length for that condition.

This particular data set demonstrates that twice as many Medicare beneficiaries enrolled and used hospice care services in 2008 than in 1998.

It also reveals that the frequency of some hospice diagnoses changed over time with fewer cancer patients and more non-cancer patients utilizing hospice care. The number of Medicare cancer patients in hospice care dropped from 52.8 percent in 1998 to 31.1 percent in 2008.

Lung cancer has been acknowledged as the most commonly diagnosed illness among Medicare hospice each year since 1998. Still, in 2006, non-Alzheimer’s dementia patients became the most common cohort served by hospice care.

Meanwhile, the percentage of Medicare hospice patients with lung cancer was nearly halved from 16 percent in 1998 to 9 percent in 2008. Additionally, hospice care facilities reported a rise in the number of neurologically-based diagnoses and unspecified conditions.

Aside from a change in the category of illnesses prominent in hospice care during that period, the Centers for Medicare and Medicaid reported a sharp increase in the average length of stay for hospice patients.

In 1998, the average length of stay for hospice care patients was 48 days but it grew to 73 days — a 52 percent increase — by 2006. Starting in 2006, the length of stay started to drop minimally, decreasing to 71 days in 2008 and amounting to a 48 percent increase from 1998.

By comparison, among the top 20 diagnoses in 2008, the length of stay spanned from 28 days for kidney disease to 105 days for Alzheimer’s disease and other degenerative illnesses.

While the length of stay from 1998 to 2008 for hospice patients with conditions such as kidney disease or cancers held relatively steady, they rose substantially for other illnesses, though it has begun to decease slightly nearly 20 years into the new millennium.

A team of physicians, surgeons, nurses, social workers, chaplains, pharmacists,
hospice or palliative medical directors and volunteers, pain specialists, government agency managers, nonprofits managers, support groups leaders and other advocates would engage and guide a severely or terminally ill patient and his or her family through advance care planning and ultimately through the hospice or palliative care processes.

With such guidance and instruction, the Institute of Medicine (IOM)‘s report titled “Approaching Death: Improving Care at the End of Life” describes a “good death” as “one that is free from avoidable distress and suffering for patients, families, and caregivers; in general accord with patients’ and families’ wishes; and reasonably consistent with clinical, cultural, and ethical standards.”

The IOM defines a “bad death” as one involving needless suffering and lack of recognition of the patient’s or family’s wishes.

NINR Research on Hospice Care

Aside from studying and documenting the basics of the hospice procedures nationally, NINR investigators discover and continue research on the health disparities in some facets of end-of-life care, especially as they pertain to culture, race, ethnicity and geographic location.

Some of the agency’s federal studies have found families with limited English proficiency are less informed about their hospice or palliative care choices and receive less support in intensive care units and other health care settings at meetings between physicians, specialists and families.

A 2009 study of the Journal of Palliative Medicine titled “Racial and Ethnic Disparities in Palliative Care” found that 40 percent or nearly two million individuals nationwide died using hospice care services.

Of that number, about eight million or 20 percent of seniors were members of racial or ethnic minority groups. This included 8.4 percent being African Americans, 6.9 percent Hispanics, 3.5 percent Asians or Pacific Islanders and less than one percent Native Americans.

The study finds these trends persist despite the number of white non-Hispanic seniors nationwide projected to increase by only 60 percent, contrasted by 160 percent for elder minorities.

Of this, the senior population of Hispanics are expected to grow by 202 percent, with older African Americans by 114 percent, 145 percent for Native Americans and 145 percent for Asians and Pacific Islanders.

Medical research and treatment experts with the New York-and-New Jersey-based Memorial Sloan-Kettering Cancer Center say research should be aimed at ridding palliative and hospice care of racial and ethnic disparities.

Despite higher death rates from cancer and presentation at later stages of disease, and similar figures for chronic obstructive pulmonary disease (COPD), kidney diseases and AIDS, minority groups substantially underuse palliative and hospice services.

In 1990, about 93 percent of patients using the Medicare hospice benefit were white. In its own research, the National Hospice and Palliative Care Organization (NHPCO) found that less than 10 percent of all hospice care patients were African-American.

Additionally, less than 10 percent of patients using hospice care in private medical service chains are members of racial or ethnic minority groups. Data from the Centers for Medicare and Medicaid chronicling an eight-year period (1992-1996) of the use of the hospice benefit found racial and ethnic minorities comprising only 14 percent.

As a result, financial and socioeconomic costs for African Americans not using the benefit at the end of life are significantly higher.

In 2000, the Medicare Payment Advisory Commission (MedPAC) revealed that expenses for terminally ill African Americans was about $32,000, against $25,000 for whites.

Reported mortality rates by the American Cancer Society in 1994 found deaths among African Americans to be higher than among whites.

Researchers are also finding geographic gaps in access to hospice care with rural areas being the most restricted. Additionally, NINR researchers are learning that the number of dying seniors in nursing homes has increased though more examination is needed to determine if there are quality control gaps in rural and urban areas.

This occurs because nursing home patients are more likely to have in-hospital deaths than in hospice care settings.

Another NINR study found that testing patients and their family members for depression was one of the services added to the menu provided in hospice care. Researchers learned that, when testing results were reported to multidisciplinary medical teams caring for the patients, incidences of patient depression were lower and quality of life were enhanced.

Yet more NINR research demonstrated that the family of a terminally ill patient is more likely to be satisfied with hospice care services if they enjoy the decision-making process.

Specifically, families were pleased if the intensive care unit medical staff recommended curtailing life support, if the staff took a patient’s wishes and their spiritual needs into account and if the family felt respected and supported throughout the process.

In the future, NINR researchers will study other aspects of hospice care:

–developing and testing other methods of lessening the physical and psychological hardships on and improving the health of caregivers, especially as the patient nears death;

–measuring the influence of physicians and specialists trained in palliative and hospice care on health care results, and;

Additionally, Compassion and Choices, an end-of-life consultation entity based in Denver, Colo., hosted a panel discussion at an Aging in America Conference in March 2013 in Chicago presented by the professional trade and advocacy association American Society on Aging titled “What Is Patient- and Family-Centered Care and What Happens When We Fail to Prevent It?”

Focusing on the rise of unwanted patient care for terminally ill patients, Compassion and Choices featured its Chief Program Officer Mickey MacIntyre who testified about needless medical treatments and its consequences of costly suffering of patients before the Institute of Medicine (IOM)‘s Committee on Transforming End-of-Life Care before the conference.

Joining MacIntyre in the panel was Lynn Feinberg, senior strategic policy advisor for AARP Public Policy Institute and social worker; Brian Lindberg, executive director of the Consumer Coalition for Quality Health Care, and; Andrew MacPherson, director of the coalition.

The three panelists reported that millions of severely or terminally ill patients nationally suffer from onsufficiently treated pain and other symptoms, experience unnecessary and expensive tests and treatments and therapies in their final days and have their advance directives neglected or abandoned by their physicians and specialists.

They concluded the panel, agreeing that care for terminally ill patients ought not involve unwanted treatments and therapies and needless suffering and public policy actions must be taken to end these practices and improve end-of-life care.

The panel took place a month after a study published in the Journal of the American Medical Association reviewing Medicare claims data between 2000 and 2009 that showed that treatment in acute care hospitals declined while use of intensive care units expanded.

The study, titled “Changes in End-of-Life Care Over the Past Decade More Not Better,” stated in its conclusion: “The focus appears to be on providing curative care in the acute hospital regardless of likelihood of benefit or preferences of patients. If programs aimed at reducing unnecessary care are to be successful, patients’ goals of care must be elicited and treatment options such as palliative and hospice care offered earlier in the process than is the current norm.”

Differences between Hospice Care, Palliative Care

Hospice care and palliative care are two forms of end-of-life care that concentrate on providing and coordinating family, friend, medical team and social work support and solace for patients of severe or terminal illnesses while addressing pain and symptoms of these conditions and both can be used at the end of life, researchers say.

However, the two forms differ.

Hospice care creates and sustains a continuum of medical, pain relief, social work coordination, religious, spiritual and moral care for a terminally ill patient, his or her family and friends, they say.

In most instances, treatments and therapies for the patient’s illness end. Typically, his or her physician or specialist has deemed the patient as having less than six months to live as the Centers for Medicare and Medicaid defines it. The focus is on affording the dying patient peace and dignity, relieving the symptoms of his or her illness and improving his or her quality of life.

Symptoms that a hospice care patient’s physicians and specialists may treat will include pain; breathing difficulties; digestive issues such as nausea, vomiting, constipation and changes in appetite; skin problems such as lips, eyes and dry skin; bed sores; feeling too hot or too cold; caxechia, a wasting condition that accompanies a serious illness like cancer that leads to weight loss, muscle weakness, fatigue and loss of appetite; fatigue; distress; forms of dementia such as Alzheimer’s disease, and; delirium.

End-of-life care does not include 24-hour nursing care so family, friends, designated advocates or health agents, home care agencies, nurse associations, volunteers and faith-based groups contribute to his or her comfort.

Assisted living personnel may help with “toileting, bathing and dressing, also known as activities of daily living (ADL), administering medicines, housecleaning, grocery shopping and cooking, preparing and feeding meals and providing company and emotional support.”

Community-based senior citizens’ services, which supplement independent living and are supported by county and state funds, churches, synagogues, temples, mosques, ethnic-oriented or civic groups offer companionship visits, household assistance, meal programs, respite for family and friend caregivers, adult day care services and transportation.

Family members and friends may assist the patient, especially one receiving hospice care at home, by answering phones and the door; checking voicemail messages; picking up mail or newspapers; conducting laundry; feeding or taking out the family pet; tending to plants; babysitting; picking up prescriptions; shopping for groceries and organizing them, and; preparing and bringing meals.

Hospice can take place at a home, an assisted living facility, a nursing home, intensive care unit or a hospital.

The 2013 Journal of Hospice and Palliative Nursing study revealed that about 40 percent of deaths nationwide took place with hospice care services. Of these, 40 percent occurred in a terminally ill patient’s private home, 10 percent in an acute care facility, 19 percent in a nursing home, 10 percent in a long-term care facility or 21.1 percent in a standalone hospice care facility.

Some individuals believe a doctor may suggest hospice care at a time when his or her patient is dying but this is not always true, researchers say. In some cases, patients and their families begin hospice care in enough time to maximize its benefits.

By contrast, researchers say, palliative care is a form of comprehensive treatment of the pain, inconvenience, symptoms and stress of severe illness, regardless of the diagnosis. Unlike hospice care, a patient need not be dying to receive this mode of care.

Like hospice care, however, palliative care focuses on enhancing the quality of life and the patient’s most important treatments and therapies and can be provided with other modes of medical care as defined by the Centers for Medicare and Medicaid. It also entails the collaboration of a multidisciplinary, white-collar medical, social worker, nonprofit and religious team.

This category of care attempts to address a patient’s physical, medical, emotional, social and spiritual needs and that of his or her family. Palliative care patients tend to be stricken with such long-term diseases such as heart failure, chronic obstructive pulmonary disease (COPD), cystic fibrosis, HIV/AIDS and Parkinson’s disease.

Care can be administered in any medical setting such as hospitals, nursing homes, outpatient palliative clinics or in a patient’s private home. For example, Veterans Health Administration hospitals also have a palliative care program.

Federal research finds that terminally patients and their families who took part in a hospice care program were more pleased with their health and socio-emotional outcomes than those who did not participate in such services.

Some of the reasons for satisfaction include that hospice patients are more likely to benefit from high quality pain management and not be subjected to unneeded tests or medicines they don’t want or need than those who don’t take advantage of hospice care.

Common Services, Issues of Hospice Care

Some hospices and nonprofits such as Compassion and Choices “provide end-of-life consultation” services to terminally ill patients, their families and friends to address physical and emotional suffering and extreme physical pain and to avoid a tendency to “turn to violent means” to terminate their diseases and, thus, discomfort.

These nonprofits aim to enable patients and their families to make a decision to begin the hospice or palliative or post-surgical care procedures and to learn about and weigh their choices.

The nonprofits advise terminally ill patients, their families and friends to commit to the following issues when mapping their hospice care or palliative care journeys:

–They must discuss their end-of-life desires and values with their families and friends and ask them for support and respect;

–They are asked to be honest with their primary care physicians, family practice physicians, internal medicine physicians and specialists about their own wishes and concerns about dying;

–If they do not feel their wishes or choices are heard or honored, they are encouraged to seek out other more supportive doctors;

–They must spell out their desires for the manner in which they want their end of life handled in the form of an Advance Directive, a standard hospice care/palliative care document that patients, their families and friends must fill out that specify different aspects of their process and reflect their wishes and values, and;

–They are recommended to assign a health care agent who will lobby for their desires and values.

Specifically, with respect to their hospice care or palliative care desires and wishes, patients are entitled to the following choices, researchers say:

–They may choose to receive comfort care to handle any symptoms of the chronic illnesses they endure;

–They must comprehend and accept the “double effect” of their religious, moral and spiritual decisions concerning dying. For example, the “double effect” moral standard addresses such acts as the use of opiates and painkillers at the end of life;

–They can decide if they want to continue eating and drinking. With the proper form of medical supervision and family and friend support, this procedure allows dying to take place with grace and peace;

–They can converse with their physicians and the rest of a medical team to determine whether to use “total sedation” or anesthesia to the point of a lack of consciousness if traditional therapies does not provide end-of-life medical relief, and;

–As a measure of last resort, if there is no other effective form of relief from terminal illness, patients are allowed to consider self-administration for the end of life.

To reflect the wishes and intentions of a patient, most advance directives include documents that provide his or her instructions for each aspect of his or her life such as a living will, a health care proxy or a Do Not Resuscitate (DNR) order and a Physician Orders for Life-Sustaining Treatment (POLST).

Before preparing a living will, a patient, his or her family and friends may visit with his or her physicians and specialists in order to discuss the variety of treatment choices for different medical situations to determine which ones ought to be included in the document should she or he be too ill to speak for himself or herself.

To oversee the execution of his or her living will, a patient is encouraged to designate a family member, friend, attorney or member of his or her faith community to serve as his or her health care proxy.

The patient must inform his or her assigned proxy of all of his or her wishes and desires so that this person can adequately represent him to physicians, specialists and a medical team.
Also known as a representative, surrogate, agent or attorney-in-fact, this individual is named in an advance directive document or durable power of attorney document for health care. The durable power of attorney for health care applies to a person who is not a family member or relative of the patient.

A DNR order is a document that requires physicians and specialists not to perform CPR or other life-saving procedures if the terminally ill patient’s heart stops beating or he or she can no longer breathe. The order is signed by doctors and placed in the patient’s medical chart and forms to fill out for one are available in those hospitals and long-term care facilities.

A POLST is a document similar to a DNR order in that it instructs physicians and specialists on the actions to take for patients with severe illnesses. The patient discusses his or her treatment choices with his or her doctor who creates the POLST and signs it.

Federal research demonstrates that patients and their families who originate the DNR orders and POLSTs are more likely to have their medical and socio-emotional wishes and concerns addressed than those who do not.

–They can speak with their physicians and specialists about their wishes for symptom management and relay any worries they have about present or future suffering. They can also detail any problems they have had with pain relief;

–They must approach families or friends to serve as their advocates if they are unable to lobby for their own hospice care or palliative desires and values;

–They should keep their designated families or friends apprised of their pain issues and all of the medicines they are taking;

–They must inform their physicians, specialists and the rest of their medical team in their advance directives about their concerns or wishes for strong pain management at the end of life;

–They ought to maintain a “pain record” or journal if their symptoms are hard to handle. They must document the location and severity of their pain, whether treatments and therapies provided relief and when it took place. They should share their notes with their doctors or hospice care nurses;

–With each visit to their hospice care facility, they should notify their nurses of their pain levels. They and their assigned health care agent should know which persons to contact, especially in time of a “pain emergency,” and;

–They must know all of their medicines, how frequently they should be taken, the proper dosing, whether they come with side effects and how they should be handled.

A print journalist for 23 years, Vladimire Herard wrote for the National Senior Living Providers Network, (nslpn.com), the Guidance Channel and Longtermcare.com. Under CD Publications, Ms. Herard wrote about senior health, substance abuse prevention, and elderly housing. Under Inside Washington Publishers, she covered health care financing for Inside HCFA and food and product safety issues for FDAWeek. Ms. Herard also covered education, crime, and county affairs for daily newspapers such as the Chicago Defender. She currently serves as Chief Communications Officer for several companies, covering senior long-term care, the pharmaceutical industry, regulatory issues and education. Ms. Herard resides in Chicago.